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  • new here

    I'm new here. My daughter, 16, has a 20 degree lumbar curve (I think) I'm just learning this terminology. I feel horrible and guilty, sorry this is long.

    She had pain for 18 months and I thought it was because she was dancing less--she'd been doing 6 classes a week and was down to just two classes a week and her back hurt after her Modern class. I thought she just wasn't in as good shape as when she took more classes. Problem is you can't "see" the curve. She had a scoli exam at 14 that was negative; she had classes with an alignment specialist who didn't see it; the pediatrician did a spine check just one month before another dance teacher noticed the asymetry in the muscles. Pediatrician didn't even believe it until I took DD back and showed her. We've had an x-ray that shows the lumbar curve. The Orthopedic Surgeon called it "tiny". I know it's not as bad (so far) than the larger curves that many are dealing with. Surgeon said there was no reason to brace. He also said that if dance causes pain she should stop dancing (DD says, no way!). I've read on these forums that some patients use braces for smaller than 20 degrees. DD is 16, so age is against her, which is why I feel horrible because if we'd gotten an x-ray when she first felt the pain we'd be further along (at least in terms of learning to cope).

  • #2
    Hi aterry,

    Welcome to the board. First, try not to panic (I know written words can sound more panicky than intended). Your feelings of horror and guilt are typical, but useless. Try to deal with your emotions, and move forward. Your DD needs you to be as positive and supportive as possible at this point.

    My DD is now almost 23yrs old. She was diagnosed with a lumbar curve at age 13. She tried wearing a brace (was non-compliant) for 6 months. Her curve started at 23 degrees, progressed to 39 degrees by age 16yrs old. At 18yrs old her curve measured 30 degrees. We are hoping this was the "final" measurement for her, since she was well past skeletal maturity. The statistics show that a lumbar curve of less than 35 degrees at skeletal maturity has no more risk of progression than the general non-scoliosis population. So far, we're hoping my DD fits into these statistics.

    Now, pain... My DD has chronic back pain. The doc assumes her pain is from the asymmetry in her body due to the rotation of her spine. Her rotation is "significant" in someone who has a moderate curve. If you know what you're looking for, you can see the asymmetry in her waist and hips and shoulderblades. My DD used to dance also. The more physically active she was/is, the less back pain she has. She likes to play the piano, and sitting at a piano is not good for her back. Lots of discomfort. She tries to adjust her activities around her back pain - sounds worse than it is. She adjusts very well and lives life to the fullest (with an office job, currently).

    Orthopods will say a 20 degree curve is "tiny" because they see much worse. However, to you and her, it IS a big deal. No one wants an unnatural curve of the spine. You may want to ask for physical therapy treatments/exercises to help relieve the discomfort and help her know correct posture (which she probably already knows from dancing) and how to relieve the stress on her back on her own. PT can be very good.

    I agree bracing will likely be a non-issue. She's likely fully grown so a brace would be ineffective in helping keep the curve from progressing (as in kids who are not fully grown).

    Again, try to think positive. Find solutions to help her with her discomfort. Remind her this isn't the end of the world. She is not alone. You are not alone. Lots of good company here. Take care and let us know how things are going.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

    Comment


    • #3
      Need Advice From Doctor In Malaysia

      Hi, I am from Malaysia. My daughter is 10 and she has 45 degree curve. She may need a scoliosis surgery very soon. I hope someone from Malaysia can advise me of any good doctor in Malaysia for a further consultation/treatment. Thanks. Rgds, ML

      Comment


      • #4
        Originally posted by Mee Ling View Post
        Hi, I am from Malaysia. My daughter is 10 and she has 45 degree curve. She may need a scoliosis surgery very soon. I hope someone from Malaysia can advise me of any good doctor in Malaysia for a further consultation/treatment. Thanks. Rgds, ML
        Hi, ML. Welcome!

        Check here: http://www.srs.org/find/index.php?mode=search

        Good luck with your search!

        Marian

        Comment


        • #5
          Welcome! You are in great company here!

          I'd listen to Carmell, too--she's one of the best! There's lots of help here on the forum!

          Marian

          Comment


          • #6
            First, Welcome to the board.

            As for your daughter. I would look into just a brace to wear at night. But be careful with the bracing as with low degree curves sometimes you will push the spine past the point of correction, and cause it to curve the other way. That is if you even want to brace at this point. Watching and trying physical therapy should be your first step at 20 degrees.

            As for that it is 20 degrees; wearing a heavy backpack on one shoulder a lot, or even a heavy purse can cause a 20 degree curve. Unless it goes over 25 to 30 degrees most doctors wont take much action as it could be caused by uneven stress on the body (growing, injury, bags), which the body usually fixes itself.

            Yoga or gymnastics, or something that requires more full spine bending should help if it is just muscle unevenness. If not it will still help the bracing a bit by making her spine more flexible. And two shoulder straps on backpacks.

            You mentioned dance, if it is ballet (though not always ballet), check to see if they did a sideways xray. Many dancers get back pain from flat back syndrome. It is from dancing, and it causes a lot of lower back pain. Even most doctors only look for it in professional ballerinas. If you look it up you will see that it is that from having such perfect posture while dancing forces your spine to be too straight (sideways) where from a 10 degree curve to 35 degree curve (gymnasts) is normal.

            Good Luck.
            Tessa

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            • #7
              New Here

              Thank you for the replies. Carmel, the doctor said to watch and wait (which is why I posted on this thread). He said to come back in 6 months. Is that soon enough? I see that some people did re-checks after 4 months. Did any of you get second opinions? Show the X-rays to another doctor? etc? Carmel, you said your daughter went from 39 degree curve at 16 to 30 degree curve at 18? That was while she was wearing the night brace? Even though noncompliant? or do you attribute the change to something else? Thanks for the recommendation about P/T. Does insurance ever cover this? Does the ortho need to prescribe it, or could the pediatrician prescribe it?

              Tessa, thanks for the advice about 2 shoulder straps--I've warned DD about this for years; way before this diagnosis. I've also always purchased (on-line for cheapness) copies of her text books to keep at home so she wouldn't have an extra heavy book bag. Glad I did that! When you discuss the uneveness of the muscles--I thought that was a symptom of the scoli; can it also be a cause? And what might trigger the muscles being uneven? (I know the term idiopathic means we don't know the cause--just curious). And, the doctor did do a side view and he said it was "normal". I didn't know that "normal" could cover such a range so I didn't ask for a more detailed description.

              Thanks, again.

              Comment


              • #8
                Originally posted by aterry View Post
                He said to come back in 6 months. Is that soon enough? I see that some people did re-checks after 4 months. Did any of you get second opinions? Show the X-rays to another doctor? etc?
                Xrays done at 3-4 months are in children who have not reached skeletal maturity, specifically very small children who have rapid growth potential. 6 month checkups/xrays is typical for adolescent scoliosis review.

                It never hurts to get second (or third, or more) opinions. However, many orthos will tell you what you already know. She is nearly (if not already) skeletally mature (ortho-wise), her curve measurement is under the degree of risk for progression (statistically) and it was late on-set scoliosis. Now, some think the late on-set part means you need more strict observation. No one can guarantee if the curve will progress or not. Too many variables.

                Originally posted by aterry View Post
                Carmel, you said your daughter went from 39 degree curve at 16 to 30 degree curve at 18? That was while she was wearing the night brace? Even though noncompliant? or do you attribute the change to something else? Thanks for the recommendation about P/T. Does insurance ever cover this? Does the ortho need to prescribe it, or could the pediatrician prescribe it?
                Kara's curves actually improved with normal, adolescent growth. This does happen. Most people this happens to never need to post on a support list like this, so the numbers here are kinda skewed in favor of progression rather than "spontaneous correction". Kara tried wearing a brace in the beginning, right after diagnosis. After 6 months of non-compliance, she stopped wearing it altogether (at age 14). She was not wearing a brace at all after age 14.

                Our insurance does cover a certain number of PT appointments in a year. Any doc can prescribe PT, as long as they document the reasons for the RX. I also agree that if she has continued pain with a mild/moderate curve, an MRI wouldn't be a bad idea. That way you'll know if there are any "trouble spots" in her back that need to be watched more closely - areas where pinched nerves can happen, stenosis (narrowing), irregularities along the spine, etc. Something to think about if she continues chronic discomfort that is difficult to get rid of, or doesn't improve at all.

                Lots to learn... I know.

                Carmell
                Carmell
                mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

                Comment


                • #9
                  Specialist In Malaysia

                  Originally posted by pmsmom View Post
                  Hi, ML. Welcome!

                  Check here: http://www.srs.org/find/index.php?mode=search

                  Good luck with your search!

                  Marian
                  Hi Marian,
                  I need some reference of specialist names who I can refer to in Malaysia. I am not able to find any names using this website. Any other advice ? Thanks.
                  Mee Ling

                  Comment


                  • #10
                    Originally posted by Mee Ling View Post
                    Hi Marian,
                    I need some reference of specialist names who I can refer to in Malaysia. I am not able to find any names using this website. Any other advice ? Thanks.
                    Mee Ling
                    I followed the link I gave you and just typed in Malaysia.

                    It sent me to a site of this doctor:

                    http://www.spine.com.my/

                    Hope that helps. I am not familiar with doctors or treatments in Malaysia as I am in the US, however people have recommended I check out www.srs.org, which is the Scoliosis Research Society, in looking for physicians for my own dd with scoliosis.

                    At least this site might be a starting point for you.

                    Take care,
                    Marian

                    Comment


                    • #11
                      new here

                      Thanks for the replies. I have a lot to learn.

                      Comment


                      • #12
                        new here

                        We have an appointment on Monday for a second opinion. We're seeing a Dr Lewis on Long Island, NY. I thought I had come across a posting some where of questions to ask the doctor but now I can't find it. I want to be prepared because the first doctor we saw only spent 10 minutes with us and said it was idiopathic and measured the curve and said come back in 6 months and that was it. I really felt that we didn't learn enough. So if there is a posting about questions to ask, could someone point me to it? Thanks.

                        Comment


                        • #13
                          Originally posted by tessa View Post
                          As for that it is 20 degrees; wearing a heavy backpack on one shoulder a lot, or even a heavy purse can cause a 20 degree curve.
                          This is absolutely not correct.

                          Pam
                          Fusion is NOT the end of the world.
                          AIDS Walk Houston 2008 5K @ 33 days post op!


                          41, dx'd JIS & Boston braced @ 10
                          Pre-op ±53°, Post-op < 20°
                          Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                          VIEW MY X-RAYS
                          EMAIL ME

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                          • #14
                            new here

                            Today's appointment was a lot more informative than the first, so I'm glad we went for a second opinion. DD has a difference in leg length of 1/4" which accounts for 6 degrees of the curve. So this doctor is calling the scoliosis "functional", not "idiopathic" which made me think if it had been caught earlier it could have at least been lessened but they said probably not because it would have had to have been caught before her menses at 12 and at that point the discrepancy was too small to catch. And by the time it was caught her growth had slowed to the point where bracing doesn't make sense. He did recommend an insert for the shoe and physical therapy for pain. She'll go back in 6 months and if the pain has not improved from the physical therapy then they'll do an MRI. He said that scoliosis in and of itself should not cause pain. He said it's more a question of what movements does she do in dance (or other activities) that lead to muscle pain.

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                            • #15
                              I did not see Dr. Lewis name on the Scoliosis Research Society Physician search site.

                              I get very nervous when I hear: "scoliosis causes no pain" and it's caused by "one leg shorter than another". Hasn't this child's leg length been the same difference since birth? If so why scoliosis now???
                              If it were me, I would get another opinion from a scoliosis specialist. A child should not have to suffer that much pain without finding a good reason.
                              Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                              Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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